the story of alphonse | part 1

My youngest – Alphonse was born last year, December 27, 2012. And as many of you know, we went through a lotfollowing his arrival. I have made a promise to keep this blog updated as much as possible about how our little boy was doing. But, I failed miserably. Nevertheless, I continued to post pictures and little updates in my Instagram and Facebook page. But the questions are still there. Some are still wondering. What happened to Alphonse? How did the surgery go? What happened after the surgery? Why does he always stick his tongue out? Does he look different?

The first few weeks after A was born have been very difficult for our family for several reasons – my recovery, my daughters and husband leaving for Singapore while A and I will have to remain in the Philippines for a few more months, A’s surgery and a whole lot of routine checks he needs to undergo and his overall health condition. That was not the time for us to talk. That was the time when we were all in emotional roller coaster and we still don’t know what is going to happen. But we remained strong.

The Truth That We DID NOT Hide

In light of all the questions that my family has been getting from a lot of people, I decided to write this post. But let me tell you one thing.

WE DID NOT TRY TO HIDE THE TRUTH.

YES, Alphonse was born with Trisomy 21 – otherwise known as Down Syndrome. A genetic disorder that is caused by having a third copy of chromosome 21.

It was the truth. And it was the reason why he had a congenital heart disease. It was the reason why he had to undergo surgery at an early age. It was the reason why he has a protruding tongue. It was the reason why he had hypothyroidism. It was the reason why he needed therapy and it is the reason why he will need ear tubes next month.

Why did we stay quiet? No, we never intended and we have no intention of hiding the truth about him. We just needed TIME – to grieve, breathe, accept. We learned about his condition the day after he was born. As a mom, I still cry when I recall that very moment. Four doctors came to see me to let me know that my child has a hole in his heart and that he has Down Syndrome. I was devastated. It felt like the world is about to end for me. My tears won’t stop falling and I can’t breathe. I just can’t breathe. The first question I had was – WHY?

That day was supposedly a celebration for all of us. We finally had a baby boy after having twins! It was supposed to be the happiest time of the year and it was supposed to be the best New Year ever. Everything just turned out – DIFFERENT. My little baby is – DIFFERENT. I am overwhelmed by all the emotions I have that time. My eyes are swollen from crying but the tears won’t stop. It just won’t stop and in the very quiet of my every night, I always cry.

I cried.

And I cried more.

And I feel hatred and anger.

Because I don’t understand why. Because I didn’t do anything wrong. Because this should have not happened to us.

I am angry. I don’t want to talk. Because every single time that I will open my mouth, my tears will sure follow. So, I stayed silent at home after Kris and the girls have gone back to Singapore. My mom feels my pain and she tries to give me comfort but I am not ready to accept anything from anyone at that moment. What I needed, is someone who will truly understand what I am going through.

At some point in time, I got tired of being quiet and started talking to friends online. But I didn’t open up to everyone just yet. I talked to only a few people and some of them offered help by introducing me to their relatives who has a child with Down Syndrome too. And then someone sent me a message in Facebook. It was Alysia, the sister of my very good friend Mandy. She shared their story to me and how she treasures her child Jesse. I have finally started to see the light. I opened up with someone who truly understands. Who has the same experience as me. Finally, I can feel the fresh air. My world is about to start again.

The anger is gone.

I cried less.

I started accepting.

My life is finally coming together again. I can finally face my baby with pride, as his mother. That day I vowed to love my son with all my heart. To fight for my son with all my might and to give my everything, to make sure that he will grow up to be a good and independent man.

I Fell In Love.

The baby in front of me has become the joy of my life and the source of my strength. I fell absolutely in love with him. He may look different to other people but to me, he’s a darling and I wouldn’t trade him for anything else in the world.

Our Life Changed. Permanently.

Yes, it did. And it will continue to change as we go through the process of it all. Our new life now includes Alphonse and despite all the struggles we have to face, our family promised to remain strong and to stay together. We will have a new beginning and we will come to love our new life.

And Alphonse’s story is just about to begin.

comments +

Darlene

September 26th, 2013 at 4:56 pm

i worked with kids with Downs Syndrome when I was in high school and the teacher had a daughter also with Downs and we talked she said the same same feelings as you have you did nothing wrong this is God’s way of you to see things differently. Downs kids are the most loving kids I have ever met and with time they can be taught just like anyone else. I will pray for you and your family always remember when one door closes another one opens.

OH Sweetie your little Man is just PERFECT. I love reading your post on FB about him and your family. Wishing you all the best in life. Your Friend

Lorry

September 26th, 2013 at 5:03 pm

You have a beautiful family! I love seeing the pics of A. 🙂 I’m so glad you were able to connect with others going through the same. It helps so much.

ari macias

September 26th, 2013 at 5:04 pm

oh, Mye:) first off, i don;t know if you have read this http://www.kellehampton.com/ if you have you should. i have a daughter who is fifteen and has autism. it is hard to accept and it hard to live with. would i change it? NO. her autism is a part of who and what she is. THAT is the child that i love with the fierceness of a lioness….not the child she could have been. we have had the lowest of lows and the highest of highs. the mourning and the grief will pass and the love you feel for that precious bundle of pure goodness will win out. Trust me, i know:) i know it may sound trite now, but it will be better. it really will. if you need to vent, throw me a message!

Mye De Leon

October 3rd, 2013 at 3:06 pm

it took me 8 months to be able to share our story but it was worth it 🙂 – i’m all ok now and loving our boy so much 🙂

Melanie34

September 26th, 2013 at 5:10 pm

I am sorry your heart hurt so much, but am so glad your boy has become your love and life. He will teach you many great things. Thanks for the courage to share your story. It will help others.

Tiffany

September 26th, 2013 at 5:11 pm

He is a gorgeous little man and you and your husband should be SO proud of the family you created. Litte A is so special in so many ways. Best wishes to you all!

Pam

September 26th, 2013 at 5:25 pm

I have been praying for Alphonse since you first requested and he is indeed a beautiful little boy!! Thank you for sharing your heart. I will continue to pray for you and your family. I love seeing your pictures on Facebook!

Katie

September 26th, 2013 at 5:27 pm

Mye, thank you SO much for sharing your family’s story with us! You have a beautiful family! You did nothing wrong by not sharing everything immediately with the rest of the world. You needed time to work through all of the emotions that you were dealing with and to find the support you needed.Sending many hugs and prayers to you and your family as you embrace your different, yet wonderful new life.

Sandy S

September 26th, 2013 at 5:27 pm

Many years ago, my closest cousin faced the same situation and the thoughts and feelings you describe bring it all back. I flew across the country to be with her and became godmother of our precious Jeff. He is now an independent, grown man and our hearts are filled with a lifetime of memories full of love and joy. He gives us more joy and love every day. I pray that your future will be filled with the same sort of sweet moments. May God bless each of you as you learn and grow with precious Alphonse!

Jessica

September 26th, 2013 at 5:30 pm

Beautiful! I won’t ever say “I understand” when it comes to the day to day care of a child with Downs Syndrome. I will share that they, Downs, are my favorite people. I’ve worked with special needs most of my life. My first intimate encounter being in high school where there were not enough classes to keep me busy. I volunteered at our middle school every few days and there I met Eddie, and fell in love with Downs kids. He was by far the sweetest, most genuine, loving person I ever met. I kept in touch with him all through my schooling and followed my heart to continue working with the special needs population as I grew. Over the years I have worked in many schools, group homes and the like and no child or adult ever captures my heart like them. A will grow to be the most living, genuine young man you’ll have ever met. His sisters will not only be fiercely protecting, but loyal, and compassionate towards all others with needs too. Downs kids are often called angels, in my experience, when they are born into a family that has other children. They bring a family together with their incomparable ability to laugh and give hugs even when you didn’t know you needed it. He will smile at everyone, never looking at them since they are a different color or look, each person will be loved equally in his eyes. It’s a promise that you too will look at people differently never stopping to point out what makes them “different.” It will be a challenge day in and out to deal with therapies and stares, but it will be even more of a reward for you, as he’s your very own angel. Enjoy every moment and know that A can and will become a successful adult with your encouragement and support. God Bless.

Mye De Leon

October 3rd, 2013 at 3:09 pm

I truly hope that the girls will grow to be more protective of him because that is what fears me the most. I wanted them to love him and that their own families will someday come to love him as much as we do.

Susan Fisher McClure

September 26th, 2013 at 5:34 pm

Strangely enough as an occupational therapist I thought his physical therapy was secondary to weakness from the heart surgery even though I have worked with young children (infancy on up ) for many years and now work with adult developmentally disabled clients. But having kept up with the news of your son and his surgery, I was so happy that he was doing well that I never gave it a thought that there were some other issues until today’s revelations. I appreciate your blog. If you have heard of the TV personality Dr. Bob (Sears); his youngest brother was born with Down Syndrome in 1989 and even though his father was a doctor and is mother was a nurse; they also went through the various stages of coming to terms with this diagnosis. Two of my four children were born after I was 37 years of age and often people would ask me of I had had an amniocentesis since I was at risk for having a baby with Down Syndrome. My rely was “no since clients with Down Syndrome were my favorite disability to work with.” That ended the conversation fairly quickly. Keep posting all the wonderful things about you baby Alphonse and your other kids as well. Life does not give us assurances of everything always going well. But how we accept and get around the “rocks in the river” is what makes life worth living and usually we are the better for it.

Mye De Leon

October 3rd, 2013 at 3:13 pm

You didn’t notice at all Susan? I’m happy though. I never had an amnio too. I declined. I would’ve never imagined what I will have to go through had I learned that early. But like my husband said, he has high respect for life so no matter, our baby will be loved well 🙂

Donna P. (djp332)

September 26th, 2013 at 5:45 pm

This brought tears to my eyes. I am sure your son will thrive because of the love you have for him.

Nancy

September 26th, 2013 at 5:51 pm

Mye your beautiful little boy is such a blessing from God. I understand the anger and heartbreak all to well. My niece was pregnant with a son 15 years ago. She had tests done because doctors became concerned about heart rate and such. She was told he would have down syndrome. She didn’t care – she loved him so much even before he was born. Well, when he was born it was not down syndrome it was Dandy Walker Syndrome. He did not have a full brain and doctors said he would not live 24 hours. He lived not just 24 but nearly 15 years to date and going strong. They said he would never walk or talk or go to school – he would simply be a vegetable. He attends school, walks with a walker and talks pretty well. He is such a wonderful, loving child. He never has learned to hate or judge people. He accepts everyone equally and loves anyone he meets. Your beautiful Alphonse will have that same ability. My niece never gave up on Curtis. At times I honestly believe she willed him to live when suffering gran mal siezures. He is now 1 year free of siezures and flourishing. You have to dig down deep and find that strength and help your beautiful boy realize his full potential in life. You will find such joy in the little things in life through him. Stay strong, stay focused and most of all thank God every day for your special boy that you will continue to love and appreciate more every day.

Mye De Leon

October 3rd, 2013 at 3:14 pm

I find joy in taking care of A. And I am so happy to hear about your story as well. You all keep me inspired. Give my warm regards to Curtis please?

ANA

September 26th, 2013 at 6:10 pm

GOD BLESS HIM !!! you have people from all over the of the world (GUATEMALA) praying for him, imagine !!! he has connected so many people he is surely a blessed child and more over a blessing you you and your lovely family.

June

September 26th, 2013 at 6:24 pm

Mye he is a beautiful and one to be proud of. I wish your family good things and happiness. Life will not always be easy and rarely does life go as planned but A is a special gift to you and your family, a true little fighter and star.

Lori

September 26th, 2013 at 6:57 pm

Mye, I love seeing your pictures of your darling kids and can see the love you and your family have for little Alphonse. His big sisters, I can tell, adore this little guy. The feelings you had in the beginning are not bad, but are actually normal for a mommy who has just had their perfect “birth story” changed. I am an NICU nurse and believe me, so many families have a hard time with an unexpected change to that story… but just think, your story is still perfect. You have a beautiful family, a beautiful baby boy, and your heart has opened up and adjusted to your new perfect life. I love seeing your updates and have often wondered how little Alphonse is doing, please keep them coming. Your story and your scrapbooks 🙂 inspire me.

Mye De Leon

October 3rd, 2013 at 3:15 pm

I am happy to be able to share our story and I find delight in knowing that I inspire other people too. Thank you 🙂

Mye De Leon

October 3rd, 2013 at 3:15 pm

I am happy to be able to share our story and I find delight in knowing that I inspire other people too. Thank you Lori 🙂

Mye…. you and your family have been in my prayers since A’s birth, surgery, and the like. Every post on FB, every pic of A, brought a ‘popcorn’ prayer to my thoughts. I am glad you were able to put your feelings down open and honestly. I have a special needs daughter… now 36… The road traveled with her has been different, filled with laughter, joy but also, some bumps. We make it what we make it… and I know you, the girls, your husband and A will have lots of interesting journey’s … He has been placed in your arms by God and he is blessed to have you! It is wonderful seeing how you have opened your soul to him including your open honesty!Who would have thought Scrapbooks would have brought us all together! Blessings!

Sandy Henderson

September 26th, 2013 at 7:37 pm

Having been aware of your situation, I must say that I admire you so much! You and your family are certainly entitled to whatever time and emotions necessary to “adjust” to your new reality; and I as well as many others, have been here for you…allowing you what you needed-when you needed. You have begun to tell your story so beautifully. I had tears streaming down my face as I read YOUR “story”; the one you felt you needed to share in your own time and in your own way. It is PERFECT, just as your love for little Alphonse is PERFECT! I look forward to you sharing the rest of your journey as a family of four. Lots of love to you and yours, Sandy.

Dianalyn

September 26th, 2013 at 8:08 pm

I too have ‘kids’ with disability in my family. They are such a joy. Love you get is so bountiful. Keep your chin up and god will take care of the rest. ..

Kim Goodman

September 26th, 2013 at 8:16 pm

Mye, having a child with Downs will be different and there will be struggles but in the end it is all worth it for he is your son. I lucked out and had a healthy baby. I had testing while I was pregnant and I was told my son had Trisomy 18 also known as Edward’s Syndrome. One of the first questions I was asked after the test results was when I wanted to schedule an abortion. I said never. Who was I to judge how badly his birth defects were going to be before he was born. Children with Edward’s Syndrome can be born with something as simple as webbing on the fingers and toes or they can die and there is a whole lot in between. In the end my son did not have Edward’s Syndrome. He is healthy except for some emotional problems. In a lot of ways he is wise beyond his 7 years in others he acts like a 3 year old and has a meltdown nearly every single day. It is a roller coaster ride with him but I wouldn’t trade my son for anything. He is my world and I would do anything for him. You are a strong woman and can handle anything life throws at you. I love seeing and hearing about Alphonse.

Debbie

September 26th, 2013 at 8:39 pm

He is adorable. You are very lucky God has trusted you and your family with one of his special children. I also had a DS daughter, Jessica, and THANK GOD everyday still, for entrusting me with her care and the love. There will never be a day that goes by that you will not learn. He will teach you more in his life, than you could ever learn in a life time without him.Bless you and your family.
Debbie

patricia braun

September 27th, 2013 at 12:14 am

Mye, when I had my son, Dylan, one of the nurses (who also had a son with Down syndrome), gave me a copy of this poem (http://www.heatherhelvey.com/2012/05/welcome-to-holland.html). As much as I still would very much like to visit Italy, Holland is home, and it is a very special and beautiful place to be. Best wishes to you and your family.

Audrey

September 27th, 2013 at 12:54 am

Hang in there, you are doing well. I’m glad I had the chance to meet you and have a chat. It’s hard work dealing with a special need child but I know he will bring you joy at the end. Best wish to you and your family.

I already knew this, but I am glad to read about your honest reactions–the fear, and the anger, and the guilt. Because I think many people feel that way, but ashamed of it–when in fact that’s a perfectly normal reaction. I’m delighted that you were able to find your way through the dark times. I think Alphonse is a total cutie-pie, though I’m sure it’s not always easy for you guys! Big hugs to you, Mye. =)

Mye – Alfonse is a gift. and each day he will give you that gift of unconditional love. I remember my student before also with the syndrome. She always makes me smile and on her graduation day, I’ve felt the pain of the mom, because she chose me to walk with her to get her certificate instead with her mom.

Your baby is gorgeous! I can’t know what you’re going through! Love your post…it surely says oceans of what you’ve been through. One of the best families i’ve ever known has a girl with same issues. She’s probably in her 30’s now. Always a strong personality but wonderful girl. You are in ,y thoughts and prayers

FussBudget

September 27th, 2013 at 6:07 am

I must tell you that I have loved seeing photos of little Alfonse over the months and I never expected Down Syndrome. I donated to his heart surgery so I knew that story from the beginning. Sometimes the photos looked like he was a little tired but what a rough start he had having to have heart surgery so young. I know nothing about how children with Down Syndrome develope through the years but I wanted to let you know that the Down is not obvious. And if it does, so what? He is just adorable. I certainly don’t feel that this is something that you have to report on continually with the online community. But I have and will continue to enjoy your photos and comments as you feel comfortable, and have the time, to do.

Beautiful Mye! I know it’s been a hard road, you’ve walked it incredibly well. I absolutely adore how much you love your Alphonse, his sisters, your beautiful family. Thank you for sharing <3

Rosemary Schwarz

September 27th, 2013 at 9:25 am

God has blessed you with this beautiful little fellow, I know he will bring you much happiness. He has a lovely family with two adoring sisters and thats all he needs…..a loving family. I look forward to hearing more about him as he grows, you and your family will be in my prayers

Diane Miraballes

September 27th, 2013 at 11:13 am

Hugs Mye! Alphonse is one lucky boy to have a mom like you. I totally understand what you are going through. My world changed after Huey, my first born, was diagnosed as a special child (Cerebral Palsy) too. I cried yes. And i also asked God why it has to happen to us. But everything is His plan. Ours ended early (Huey died at 3 yrs old) but God has a lot of plans for Alphonse and your family. Be strong and keep the faith. He won’t give you problems you can’t handle. God bless you and kisses to little Alphonse.

I appreciate seeing your photos and updates of your beautiful son. However, I certainly would hope that no one was harassing you or accusing you of being non-transparent. You don’t owe anyone anything with regard to your personal life. You have a right to your privacy just like everyone else does. I hope you know that Mye. You have been blessed with a wonderful, beautiful, family. So your son has an extra chromosome? I’m sure he will rock it! Stay strong. – maya

Lady bug

September 28th, 2013 at 1:59 pm

Mye – you are so brave for sharing this with everybody. I have followed A’s story since I first heard of your request to buy supplies to help pay for his surgery. I have enjoyed all of the pictures you have posted of him and the rest of your family. He is truly beautiful. I wish all of you health and happiness.

Lulutoo

September 28th, 2013 at 10:08 pm

That must have taken a lot to share the whole process, Mye. When I noticed A’s tongue was usually stuck out, I worried that they had done harm to him during the surgery. It’s good to know that’s not the case (and really, I thought it seemed to be getting better in recent photos anyway!) Keep hoping and dreaming for his bright future. He’s just adorable and so lucky to have you for his mom. Bless you and your beautiful family.

I was crying as i read the story. Thank you for sharing it with me. The exact same feelings flowed into my soul the day the diagnosis to our A was given. But now, I’m a happy mom 🙂

Tink

September 30th, 2013 at 12:50 am

Oh Mye, sweetie, my heart breaks for you. Don’t ever feel that you owe us anything, don’t ever think that you have to tell us anything! You don’t. I once told you that I followed you during your pregnancy and after Alphonse was born so closely that I feel he is part of our large family that cares so much about you, about the gorgeous little ms, about your hubby and the twins. You know we soak up all the daily updates on Facebook, they are often the first I look up.
I admire you tremendously and always wonder how on earth you find the time to design the gorgeous stuff that you do and care for your family at the same time.

To me Alphonse is not different, he is still that funny, always smiling, gorgeous little boy! You have all the reason in the world to be proud of him!
Much love to you and yours!

[…] has written about Alphonse’s birth story and diagnosis here and here. Get your tissues […]

Mye De Leon

October 4th, 2013 at 2:07 am

Thank you everyone! It makes our family very happy just knowing a lot of people love our boy! It makes a HUGE difference in our lives but he sure is the core and an additional foundation to this family.

[…] go deeper into its definition. But if you’re a first time reader in this blog, you may read the story of Alphonse […]

Cindy

March 28th, 2014 at 11:27 am

I am glad you posted about your Son, You and Your Family. I am glad you wrote about your feelings. I worked with people like your Son, ages 6 months-senior for 30+ years. My Husband’s ex-wife abandoned her Son. When my Husband and I married, our Son was a part of the marriage package. Even though he does not have Down Syndrome, my Son has ADHD, Auditory Processing Disorder and Learning Disabilities. Joy from his personal growth seemed to be overshadowed by setbacks. Still, like you, I was determined for my Son to learn as many independent skills as possible.
My Son is 21. He graduated from High School with a regular diploma. He went to college for a year and a half. When it became too difficult for him, we supported his choice to work. He’s successfully maintained his job for 9 months. His self esteem is at an all time high. Even though we always had goals to achieve during his childhood, our main goal was for him to be happy.

You get a free happiness ticket with your Son. Even though he is diagnosed with Down Sundrome and a heart defect, he has been graced with unlimited smiles and joy to give to you and your family.

I am happy you have gone through the stages of grieving for now. There will be times when you will go through it again. That’s ok. You are blessed with a special person who brings unlimited love to you and your family.

[…] a special needs child named Alphonse. He has Down Syndrome and he is the love of my life. You can read more about him and get to know more about this beautiful gift we have. Today, we are celebrating World Down […]